CHAPTER 23: 14 Days…Tai
Chi Withdrawal Is Setting In!
September
1st, 2012
I
am now under the care of my Pulmonologist, nearly always the admitting doctor
for me, who has taken a very aggressive approach to treatment in order to try
to avoid hospitalization. I am on a
large, extended dose of Prednisone (5 weeks minimum), do nebulizer treatments
at least 2x/day (optimally three), and am still taking an antiviral,
antifungal, and now a new antibiotic. I
have a “swish & swallow” elixir that I must use 4x/day…and…and…and… As you can see, the intensity of this
treatment leaves little time to do anything else. BUT…I am practicing Tai Chi at home and it is doing something positive
for me.
As
more and more bugs come on, one never clearing before the next, it is easy to
feel beaten and get depressed. And even
though I have done this hundreds of times before, it is natural to get anxious
about the outcome. The cycles are becoming longer, the bugs more resistant, the
disease; following the natural course of progression. For some reason this time,
I am more anxious than ever
before. Perhaps it is because my mind
and body are communicating more easily? I can tell you my mind knew long before
I allowed myself to acknowledge that I was seriously ill, that I was trending
downward. The anxiousness has been there
in the background for the past three weeks, increasing ever so slightly by the
day. I usually do not experience this
until a day or two before I am admitted to the hospital. In the past “anxiousness” has been my body’s
final scream when I have hit the wall and met with exhaustion. It always ends
in hospitalization.
So
what is Tai Chi doing for me? First, I
credit Tai Chi with having facilitated mind body communication enough (to this
point) that “anxiousness” is now a signal, not a last reaction to an already
irreversible health disaster. When I am
engaged in a health crisis, every
signal is critical to early intervention and treatment. I have several of them, whose details I won’t
go into, that unfold in a certain, predictable pattern that alert me to
“something going on” and its progression.
Responding to these signals by slowing down, beginning nebulizer
treatments, eating healthy, sleeping more, checking blood sugars more
frequently and tightening control over highs, are what I should do immediately, not
what I do do.
I
usually go through periods of 1) acknowledgement “something’s going on”, 2) a
heightened sense of “the sky is falling” mentality, 3) reacting to the fear
that I am “going down again” by doing the exact opposite of the things I should do in the face of those
signals. Is it anger? Is it a mindset that, ‘death be damned, I’m
going to get every ounce of my life while I’m here?’ Or is it a conditioned survival reaction to
my primal fear of being dependent on anyone else? Perhaps it’s a little of all. That being said, don’t be too quick to judge
me.
You
see, I am no different than any of you.
These things I should do are
inconvenient. They interfere with the
life I want to live, and the time
frame in which I can do it. They “slow
me down” considerably, and it has become a habit of mine to put up my dukes and
fight hard every day to keep going regardless of the mountains that drop from
the heavens. As I said before, I walk a
tightrope every day, as all of us do to some extent, and sometimes I just want
to throw down the umbrella and “be like everybody else.” Healthy people can afford to do that, even
though it isn’t the smartest response for anybody. The consequence might be one
or two days knocked into bed because a germ got a hold. I can’t afford to do that because once a germ
gets a hold of me, it has me in its scope, aiming for the most lethal, direct
path to anarchy; to dictatorship.
My
family yells at me for doing too much at these times. People offer sage advice,
words of wisdom I know are true and that
I should adhere to. But always in the
background during these crises is a whopping high dose of Prednisone for
lengthy weeks, sometimes months, at a time that drives me to do just the
opposite. Did you know that one of the side effects of “long term” Prednisone
therapy is manic behavior, even psychosis?
It’s true. Another is OCD
(Obsessive-Compulsive Disorder). Have
you ever been in the presence of someone where these conditions were operating
in tandem? Trust me, you wouldn’t want to be; I assure you it is not pretty.
For
some reason, unknown to my medical team, my body does not (never has)
synthesized Prednisone (a man-made form of the body’s natural hormone,
cortisone) appropriately. A normal body
produces 7mg of cortisone daily on a non-stressful, average day. 7mg is needed
just to survive. More is produced by the
adrenal glands exactly as needed (when injured, sick, stressed, etc.). Lots of cortisone floods the body in an
emergency triggered by the “fight or flight response” (an auto accident, the
death of a loved one, even divorce). My adrenal glands do not function any
more, having atrophied from 21 years of constant steroid dependent asthma. So
every bit of cortisone my body needs is delivered in the form of Prednisone (a
synthetic hormone made to mimic the effects of the body’s naturally produced
cortisone).
If you’ve ever seen a
drug addict going through withdrawal in an effort to “get clean” you have a
pretty good picture of what I go through when my Prednisone taper hits about
25-30mg a day. I have tremors, sweats,
manic anxiousness, my pupils dilate, and I want to crawl out of my own skin, I
can’t and don’t sleep for days at a time, I eat everything in the house any
time of day or night. I try to fight it,
but Prednisone wires me so badly that I literally can’t sit still. I sweat out
of my clothing at least 3x/day resulting in a weight loss of up to 20lbs over
3-4 months of tapering (partly a function of the significant increase in heart
rate for the duration of therapy). I am
short tempered, ill-mannered with my family, and become obsessive about (of all
things) the cleanliness of my house.
That withdrawal fades
very slowly as the Prednisone dose drops (never tapering more than 5-10mg/week),
but the symptoms never disappear completely until I am on 5mg or less (25mg of
Hydrocortisone is my maintenance steroid dose).
And all of this combines with pounding fast heart rate, constant
shortness of breath and wheezing such that I cannot leave my home for weeks,
sometimes months at a time.
A
year ago, watching me go through this, my doctors got together and decided to
try something different. I was
prescribed non-narcotic medications whose sole purpose is to relax you; to take
the “edge” off, like Valium. I don’t
know exactly whose idea that was, but they are on my list of superhero’s in the
medical community. It works! I don’t become addicted though others might,
because apparently I don’t have that addiction gene (my refrigerator would beg
to differ). I don’t have to take much to
be able to re-enter society without being trussed like “Hannibal Lechter”. Most importantly, it curbs the incessant
aching to crawl out of my skin.
I
tell you all this so that you will clearly understand what Tai Chi means to me.
I’m sure you’d agree how critical it is for someone with this profile to learn to relax; to learn to control
relaxation as well as I don’t control
my panic – in other words, to restore order and peace to a system previously in
free-fall. Several times over the course
of this illness cycle I have found myself winding up like a spring driven toy.
But wherever I was, I closed my eyes, took deep controlled breaths, and performed
a couple basic Tai Chi/Gong movements.
In spite of the Prednisone dose, the anxiousness signal, the desire to
escape from my own skin, I relaxed. I relaxed so completely that I felt the
effect on my heart rate and even my blood pressure. The effects of doing that remained with me
for hours, and even drug interactions and stress exuding people around me did
not tempt me back into that panicky, conditioned behavior. To achieve all that,
how can mind and body not be
communicating? That is what Tai Chi is
doing for me.
Try
it!
CHAPTER 24: Confessions of a Mad Woman
September 8th, 2012
Last
night I went to the school to meet and greet a new prospective student who was
coming to participate in his first class of a two week trial of Kung Fu
Panda. I’ve had many telephone
conversations with his father, all leading up to getting him to take advantage
of this offer, because these are the kind of people who epitomize what Shaolin
is all about. I did not know that John
was Asian, but after meeting him, it made sense. Like most Asian parents I have met, he and
his wife are seriously engaged in their five year old son’s life. They are keenly aware of what he loves (animals,
bugs, and their movement), and have searched for unique ways to take advantage
of that love while creatively educating.
That is what led them to the idea of pursuing Kung Fu classes for their
son. When he told me that I realized
that the box he thinks within is so much bigger than the box I thought within
when my children were 5 years old.
Now,
I’ve never seen the Kung Fu Panda class or its students, as I am usually
attending Tai Chi in the morning or later, at 7:00pm. I was feeling very sick
and had to force myself to go because I had made this commitment and a promise
to a parent I want to see join the school.
I arrived half an hour early and had the joy of watching the arrival of the
six or more students who regularly attend Kung Fu Panda class at 5:00pm. I don’t often get that close to children 5 to
7 years old because of the limitations set by my autoimmune disease. Oh, how I
miss that exposure (not the germs mind you; but the experience of observing
them). Many of the children in the class
are Asian, but not all. Even with all
their unbridled energy in full view before class, they were incredibly
gracious, welcoming, and polite. My new
student couldn’t help but feel welcome because they went out of their way to
make him feel so. Sarah introduced me
and John to the other parents, all of whom stayed around in the viewing room to
watch their children’s class. One or two
fathers even attend the class with their children. I was told that even the mothers and sisters
of a few of the students sometimes attend, or attend an adult class in an
adjoining room. These families have
chosen to embrace the benefits of Shaolin martial arts wholly. I can’t imagine what a different developmental
environment that yields for their children.
It was obvious in how their children behaved and how they related to
adults like me. I asked a couple 5 year
old students if they would take my newbie under their wings and they
enthusiastically agreed, running into the classroom and telling the other kids
to come and meet the new guy with the enthusiasm of a child getting a new puppy.
Perhaps that is the
greatest benefit of Shaolin martial arts…there is no tolerance of that
behavior. At age five these kids are
being honored for who they are. They are
respected and are expected to demonstrate that respect in return. The fundamental lessons that we as parents
struggle to teach; respect, focus, discipline, honor; are all incorporated into
this program in a way that positively reinforces our efforts. Maybe, I’m bias, but I swear I perceived the
difference immediately. I love children,
but not all children love me. So when I
find a child or a group of children who I can relate to easily in a loving,
funny, light manner…I’m in Heaven! Every
one of these students was an angel to me.
They say that certain
encounters/interactions produce a positive effect on us that can be
scientifically measured in terms of reduced blood pressure, lowering our heart
rate, causing stress hormone secretions to drop, in essence, making our body
smile. That is what this experience did
for me. I really felt physically ill, I
hadn’t slept more than 4 hours in 3 days, I had a fever, but I was not cognizant
of these things while there interacting with the Kung FU students at the
school. They set me so at ease in fact,
that the usually stressful process for me of introducing myself to a crowd or
helping make another adult feel welcome, disappeared. No…correction, they never even surfaced. I went to
make a family feel welcome, and instead, families welcomed me. There is no greater medicinal therapy than finding
yourself in a place where there is no struggle to be “one of the group”. Those types of “pure” environments are created
when people have no ulterior motives; unfortunately I’ve found, none too often.
I don’t know if my
newbie will sign up at the end of his Kung Fu Panda trial. I certainly hope he will. I don’t earn anything from him doing so, yet
I would gain so much just knowing that because of my added efforts, one more
child will get an exceptional introduction to teamsmanship, sportsmanship, and
unconditional acceptance (not to mention the benefits derived from immersion in
the Asian mind-set).
So if you ever need a
pick-me-up, or your feel a sense of hopelessness, visit the school Monday,
Wednesday, or Friday around 5:00pm and just observe…and just be. You won’t be sorry that you did.
PS: Wear a germ mask!
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